Switching to the Pump

Kaiah made a new friend (Naomi) recently. She went to her house today for a play date. But Naomi isn't your average friend... She's Kaiah's age, lives a few minutes from our house, goes to our church, and..... has Type 1 Diabetes. And while I'm sad that she was recently diagnosed, I'm happy that both of them have each other, that they can see they aren't alone. I think her mom and I are both interested in helping the girls find friends who they can identify with. Hopefully this is the start of a fun friendship and mutual encouragement in managing T1D longterm. Anyway, I was explaining some of the features of Kaiah's insulin pump to them today and realized that I still haven't written about the switch to the pump.

I keep waiting until we are settled in to a routine with her blood sugar numbers and can sleep through the night confident we have it all figured out... now I'm not so sure we ever will. We still are working on figuring out her night rhythm.

Kaiah got her pump back in early November. It has been so great in regards to not having to give shots. At potlucks she can graze throughout the meals (and doesn't have to eat everything all at once like before), we don't have to pull up her shirt to give a shot (it's all remote control now with the glucometer), and she can be more "normal" in general. Aside from the finger poke and the neurotic parents weighing food in the background, no one would even notice that she is a Type 1 diabetic and that she was receiving insulin in her subcutaneous tissue. That part is great! But it didn't start out great at all.

When we went in for the pump, Kaiah was at a very low resistance to the insulin. She didn't need a great big dose of insulin for her corresponding carbs. So when we set up the numbers and ratios with the Diabetic educator, we didn't count on what would happen next. She got sick. Really sick. She was so sick, her oxygen saturations would not go up past 92% (98% is normal) and she had retracted breathing. Her lungs were full of junk and she had a very persistent horrible cough. This meant that her blood sugars skyrocketed. The body does that in response to a stressful event every time. But this was not an ideal time for this to happen. We couldn't get her sugars under 300 for quite a while. Our wonderful Endocrinologist, Dr. H, wanted to be conservative and not change the settings too fast but it took quite a while to get her numbers under control as she needed a much greater amount of insulin during her illness.

The normal routine for establishing blood sugar patterns in a new pump patient is checking blood sugars every 2-3 hours day and night. That way we could see what Kaiah's body does at certain times of the day and night. Then for the several weeks we e-mailed Dr. H daily with the numbers: ratios, amounts of carbs, sensitivity factors, lunch to carb ratios, insulin on board, and other numbers that the pump spit out every time we did anything with Kaiah's pump or glucometer. Here was/is our setup:


The notebook with a spreadsheet for all the numbers, flashlights for poking Kaiah in the dark, the glucometer (this communicates with the pump and can give insulin via remote control in addition to testing blood sugar), and the blood ketone tester which we used quite frequently. The ketone meter is to measure the value of how much the body is starting to break down as a result of high sugars and not enough insulin.

Side note: One time a few months earlier Cliff had ordered some more test strips. They sent several packages of the wrong thing... Instead of test strips for glucose, they sent us 30 ketone strips (valued at $165). They didn't charge for them though, it was their mistake. So we put them in the cupboard thinking most of them would just end up expiring. We couldn't have known that a few months later Kaiah would use every last one of them during the initial pump stage because of her illness. It was just a sweet little reminder that God causes things to work together for our good. :)

Then when she got sick, we added more supplies to the routine:

We took turns waking up for the 12 am, 3 am, and 6 am blood sugar/ketone checks which left us feeling like we had a newborn again and really tired... For this we set a few alarms...


Even with these, we occasionally slept through. To be quite honest, I feel like it has been pretty exhausting. The rest of us ended up getting Kaiah's cold... Cliff's turned into pneumonia (which he denies). We were both pretty sleep deprived (Cliff never complained) and the process seems to be taking a really long time. Still we feel like it's worth it. Kaiah likes the pump... not the every 3 day changes as much... but likes it more in general.

We have really enjoyed working with the endocrinology team at OHSU. Joannie, Kaiah's nurse educator has been so encouraging of our efforts and so sweet with Kaiah. She's given us extra supplies, has helped us trouble shoot and made us feel really at ease with the process.




And Dr. H has been so excellent. She was so patient with Kaiah's sickness, went with our suggestions at times, as we started making more of the pump change decisions on our own, and even had us call her at home on the weekends to trouble shoot. She is excellent and so sweet to Kaiah. We are very blessed.

When we were done with our appt. we signed Kaiah up to be in a research study along with thousands of other diabetics around the country. It's basically just a chart study that follows her for many years and probably won't help Kaiah much, but it might make a difference for someone down the road. She got $25 for signing up. But at the end there was an option to donate it to kids in other countries who don't have the supplies and technology available that we do. She thought about it for about 2 minutes if she wanted to keep it or give it away...

and she finally decided to give it to a needy kid in another country. Such a sweetheart. Is it possible that kids in 3rd world countries have this same pump she has? I honestly haven't taken the time to figure it out. We have so much. Treatment of diabetes has come so far...

The other day at church, someone saw Kaiah's pump and said, "Oh, that's so cute that she's pretending she has a pager :)" To which I said, "Actually, that's a $6,000 insulin pump... it's no toy!" For now she thinks it's cool to display it proudly in the bright purple/pink tye dye cover for all to see. We'll see what the future holds... maybe a cure!

I'm so, so thankful such a great option while we wait.